Identifying AT Research Needs and Setting AT Research Priorities for the Interagency Committee on Disability Research

Remarks by Martin Gould, Ed.D.
Senior Research Specialist
National Council on Disability

Good day. Thank you very much for inviting NCD to participate today. I am Martin Gould, Senior Research Specialist at the National Council on Disability (NCD). NCD is an independent federal agency making recommendations to the President and Congress on issues affecting Americans with disabilities.

NCD is charged by Congress with monitoring federal statutes and programs pertaining to people with disabilities, and assessing their effectiveness in meeting their needs. Its mission is to provide a voice in the Federal government and to Congress for all people with disabilities in the development of policies and delivery of programs that affect their lives.

Among its various duties, NCD provides advice to the Director with respect to the policies and conduct of the National Institute on Disability and Rehabilitation Research, including ways to improve research concerning individuals with disabilities and the methods of collecting and disseminating findings of such research.

Why focus on AT research needs and priorities?

America enjoys a relatively high standard of living. In part, this results from our ability to invest in sophisticated, open, and flexible research and training systems. These systems provide the knowledge base for innovation that underpins economic expansion. They also promote higher levels of social well-being in the community.

The President’s New Freedom Initiative (NFI) laid out a blueprint to increase investment in and access to assistive technologies and a high-quality education and to help integrate Americans with disabilities into the workforce and into community life. The setting of AT research priorities, through the ICDR, is one means to complement and enhance the NFI as well as the President’s Management Agenda and E-Government initiative.

The goals of AT research priorities should be:

1. to identify and address areas of strength, opportunity or need where an increase in research effort - including collaboration, coordination or investment - would make a significant contribution to national wealth and/or well-being.

2. to determine what shift in research effort is needed, what new or improved research activities are required, and how the targeting of research effort can best be achieved.

 

AT research priorities should address areas of particular importance to individuals with disabilities. The priorities should also reflect a ‘whole-of-government’ focus, which has the potential to improve research, and broader policy outcomes.

What is NCD’s approach to identifying research needs and setting research priorities?

In 1996, NCD decided to convene a summit of people with disabilities to discuss how to achieve independence in the next decade. Over 1100 grassroots disability leaders from around the country were asked to complete nomination forms for participation in the summit. Three hundred participants were chosen on the basis of the following criteria: disability and cross-disability representation; geographic representation; ethnic, racial and other diversity; policy area expertise and breadth of knowledge in disability policy.

One of the highest priority policy research areas that stakeholders identified for NCD was civil rights enforcement. As a result, NCD developed a long-term research agenda for evaluating the status of implementation and enforcement of key laws, and reporting the findings from its civil rights research to the nation. Beginning in 1999, through a series of published reports, which we call "Unequal Protection Under Law," NCD has examined enforcement and implementation of civil rights legislation, such as the Americans with Disabilities Act, the Air Carrier Access Act, the Individuals with Disabilities Education Act, Section 255 of the Telecommunications Act and Section 508 of the Rehabilitation Act, Section 504 of the Rehabilitation Act, and – the soon to be completed - Civil Rights of Institutionalized Persons Act in 2003.

NCD is currently engaged in a new cycle of policy research we refer to as “Investing In Independence.” This work looks at how federal policies and programs work to create results and a better quality of life for Americans with disabilities. The first study in this new cycle of policy research dealt with the issue of delinquency prevention and juvenile justice. This research need was identified by a range of stakeholder groups, several NCD Board members, and a preliminary review of the status of evidence-based research. From our initial analysis it appeared that the overall numbers of youth with disabilities at-risk for delinquency and severe consequences (e.g., incarceration, removal from their communities), and the lack of effective interventions, had reached a critical mass at the national level. NCD issued its report on this important matter on May 1, 2003.

Other studies from this new line of research will include consumer-oriented and directed health care reform, and universal design in technology.

What objectives and principles drive today’s activity?

It is likely expected that AT research priorities will focus particularly on areas in which:

• there are significant challenges that span the responsibilities and capabilities of several research agencies or institutions
• technological, economic or social change creates significant new opportunities
• the interface between the research system and potential beneficiaries needs to be enhanced.

The objectives of AT research priorities likely are:

• to identify and address areas of strength, opportunity or need where an increase in AT research effort - including collaboration, coordination or investment – would make a significant contribution to national wealth and/or well-being
• to determine what shift in AT research effort is needed, what new or improved research activities are required, and how the targeting of research effort can best be achieved

In identifying needs and choosing priorities you and the ICDR can ensure that research priorities: 

• Point to a national vision for AT research and are aspirational 
• Capture the imagination and support of the community-at-large 
• Are based on excellence and supported by strong basic research
• Stimulate a collaborative approach to solutions 
• Are multidisciplinary in nature
• Are supported over an appropriate timeframe
• Produce measurable outcomes and evidence

In other words, these priorities will target research areas of particular importance to America’s economy and society, where a whole-of-government focus has the potential to improve AT research, and broader AT policy outcomes.

Guiding Questions

Social Benefits

What is the potential of the research for stimulating technological development that can directly affect an individual’s quality of life and/or has application beyond a particular set of research needs?
Will the research address unmet AT needs for underrepresented populations? What are those research needs, and in what way(s) will research priorities>initiatives address those unmet needs?

Scientific Merit

What are the key scientific issues related to the AT research need and priority?
Why is the AT research need and priority important or critical to the stakeholder group?
In what way will addressing the AT research need advance our understanding of the role and impact that AT research has on people’s lives in the areas of employment, education, health care, and independent living?
What are the particular reasons for proposing these AT research needs? Are there other avenues for addressing these needs?

Programmatic Concerns

Is the AT research and/or priority technologically feasible?
What current and long-term research infrastructure is required to investigate AT research needs and support the priorities?
In what way(s) will key stakeholders (e.g., consumers) participate in the research needs>priorities>initiatives?
In what way(s) would the priority stimulate research and education? What opportunities and challenges will the needs>priorities>initiatives present for consumers, universities, federal laboratories, and industry contractors? What will be the likely impact on federally sponsored science? Can some current AT research activities be curtailed in the AT research is successful?
What are the costs likely to be, by year, to the Federal budget?

Selection criteria

In keeping with the ICDR’s role of “coordination,” one key objective for AT priority setting is to identify areas where a whole-of-government approach can deliver benefits additional to those captured by individual agencies’ existing research funding system. Government can play a role by examining proposed priorities against its overall policy objectives. However, this alone is not sufficient.

Ultimately, for priorities to be worthwhile they should have three important characteristics:

• an increased AT research effort must be capable of delivering a measurable and significant positive impact on the objective underlying the priority
• America must be able to build the capacity needed to achieve that impact
• America must be able to capture the benefits of that research (either through its commercialization or application).

Some criteria to consider when assessing nominated priorities and developing a short-list of AT research priorities for ICDR consideration include:

• The ability for Federal Government investment in AT research to have a measurable and significant positive impact, by:
  • achieving a ‘critical mass’ through specific support and/or coordination and collaboration across federal agencies
  • addressing American needs and challenges arising from our citizenry, economy, and way of life and/or culture.
• The ability for the Federal Government to build the capacity to achieve that impact, taking into account:
  • existing expertise, experience and technological capacities or whether such capacities can be reasonably acquired
  • the availability, quality and scale of necessary research infrastructure
  • the overall magnitude of the investment required to make an impact.
• The ability for the Federal Government to capture the benefits of the research, through the potential of the research to:
  • achieve commercially or socially relevant outcomes over the cycle of the priorities regime
  • enhance America’s overall innovation capacity by the broadening of the knowledge base and new sciences
  • address the unique needs and abilities of Americans with disabilities to fully participate in the mainstream and bounty of the nation’s life.

One Sequence for Setting Research Priorities

The process of developing priorities for AT research involves several separate groups of people, including the organization that supports the research, the group charged with the responsibility for recommending priorities, and the professionals or teams that may develop initiatives. Formal procedures to be followed by the group recommending priorities and developing an agenda can be constructed as a series of distinct steps for selecting and ranking the initiatives, including:

1. Specify the research possibilities and categories - The first, and often-difficult step, is to specify exactly what will be considered and what will be excluded from the process. If the collection of eligible candidates is sufficiently varied, then appropriate categories will need to be specified.

2. Specify the evaluation procedure to be used in priority setting - Evaluation schemes can range from subjective and qualitative approaches to formal, quantitative procedures. If quantitative procedures are to be used, then the weights to be applied to each of the criteria must also be specified.

3. Verify category assignments - An initial review will help to verify that proposed research projects submitted for consideration by your working group in a specific category meet the requirements you establish in advance for that category and are prepared in accordance with specifications you set.

4. Rank categories and assign relative values - Working groups should develop a procedure for ranking the categories, and produce a matrix of priorities. For each category, working groups should also assign a fraction of the total available resources to be made available for research projects.

5. Prepare the agenda and summary document - The relative rankings from step #4 can be converted into an agenda that, if not a schedule of NIDRR year-by-year activities, at least recommends an order in which the categories and potential research initiatives are to be pursued. The agenda should be explicitly stated and justified in a preliminary summary document.

6. Perform a perception check - Here, the working group preparing the priority recommendations should review its work, asking, does this all make sense? Are there any issues left unresolved? Is there a potential for surprises or unexpected adverse consequences?

7. Publish the results - Finally, a report detailing the priority-setting process, the prioritized recommendations or recommended agenda, and a discussion of the implications should be published.

Conclusion

The opportunity you have to help provide guidance to ICDR is significant. Be critical and be open-minded in your work in priority setting. Enjoy your working groups. Thank you for listening.

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Last Updated: July 8, 2003